Literature DB >> 17273897

Evaluation of the effectiveness of posters to provide information to patients about a DNA database and their opportunity to opt out.

Jill M Pulley1, Margaret Brace, Gordon R Bernard, Dan Masys.   

Abstract

OBJECTIVE: Vanderbilt University Medical Center is implementing a DNA Databank to facilitate genomic research. This study describes the use of informational posters to communicate to patients about the Databank and their option to not participate.
METHODS: Informational posters were displayed in two phlebotomy areas prior to the implementation of the DNA Databank project. Patients leaving the phlebotomy areas were interviewed by non-medical personnel about the posters and the Databank using a structured interview guide.
RESULTS: Completed interviews with patients (n = 192) show that only 32% recalled seeing the posters (memory of the image only, or of the image and the content of the text). The majority of participants (93%) either recalled the poster or reported that they were comfortable with the DNA Databank concept after they had been read a brief statement about the program. A significant relationship (p = 0.001) appeared between respondents' awareness of research practices concerning anonymous discarded tissues and their level of comfort with the DNA Databank.
CONCLUSIONS: Individuals who report feeling uncomfortable with the Databank are an important population to inform about the Databank and opting out. Since there were no statistically significant demographic differences between those who recalled the poster and those who did not, there is no way to prospectively identify which patients will not be reached by the posters or who may feel uncomfortable with the program. Additional mechanisms to promote widespread notification are needed.

Entities:  

Mesh:

Year:  2007        PMID: 17273897     DOI: 10.1007/s10561-007-9033-4

Source DB:  PubMed          Journal:  Cell Tissue Bank        ISSN: 1389-9333            Impact factor:   1.522


  8 in total

1.  Proven processes: The Vanderbilt Institute for clinical and translational research .

Authors:  Jill M Pulley; Gordon R Bernard
Journal:  Clin Transl Sci       Date:  2009-06       Impact factor: 4.689

2.  Ethical and practical challenges to studying patients who opt out of large-scale biorepository research.

Authors:  S Trent Rosenbloom; Jennifer L Madison; Kyle B Brothers; Erica A Bowton; Ellen Wright Clayton; Bradley A Malin; Dan M Roden; Jill Pulley
Journal:  J Am Med Inform Assoc       Date:  2013-07-25       Impact factor: 4.497

3.  Development of a large-scale de-identified DNA biobank to enable personalized medicine.

Authors:  D M Roden; J M Pulley; M A Basford; G R Bernard; E W Clayton; J R Balser; D R Masys
Journal:  Clin Pharmacol Ther       Date:  2008-05-21       Impact factor: 6.875

4.  Principles of human subjects protections applied in an opt-out, de-identified biobank.

Authors:  Jill Pulley; Ellen Clayton; Gordon R Bernard; Dan M Roden; Daniel R Masys
Journal:  Clin Transl Sci       Date:  2010-02       Impact factor: 4.689

5.  Patient awareness and approval for an opt-out genomic biorepository.

Authors:  Kyle B Brothers; Mathew J Westbrook; M Frances Wright; John A Myers; Daniel R Morrison; Jennifer L Madison; Jill M Pulley; Ellen Wright Clayton
Journal:  Per Med       Date:  2013-06       Impact factor: 2.512

6.  Thematic analysis of cardiac care patients' explanations for declining contribution to a genomic research-based biobank.

Authors:  Pamela Holtzclaw Williams; Lynne S Nemeth; Jennifer E Sanner; Lorraine Q Frazier
Journal:  Am J Crit Care       Date:  2013-07       Impact factor: 2.228

7.  Community engagement in biobanking: Experiences from the eMERGE Network.

Authors:  Amy A Lemke; Joel T Wu; Carol Waudby; Jill Pulley; Carol P Somkin; Susan Brown Trinidad
Journal:  Genom Soc Policy       Date:  2010

8.  Methods for the de-identification of electronic health records for genomic research.

Authors:  Khaled El Emam
Journal:  Genome Med       Date:  2011-04-27       Impact factor: 11.117

  8 in total

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